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Correspondence: Address correspondence to Carol J. Whitlatch, The Margaret Blenkner Research Institute, Benjamin Rose, 850 Euclid Avenue, Suite 1100, Cleveland, OH 44114. E-mail: cwhitlat{at}benrose.org or stucke{at}benrose.org
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Abstract |
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Key Words: Dementia • Decision making • Caregiving
In contrast to research on end-of-life preferences, the study of long-term-care decision making of older adults and their family members is in its early stages. Two findings consistently reported are that older persons want family members involved in their health care decision-making process and that family members are not generally prepared to take on this role (Roberto, 1999). Family caregivers often make critical daily care decisions without an understanding of what their loved ones value and find most meaningful in everyday life. Although much of the research in this area is concerned with the older person's autonomy, few studies have examined family preferences and decision making about home- and community-based long-term care, and even fewer highlight the experiences of individuals with cognitive impairment. Two themes, in particular, remain relatively unexplored: (a) assessing the values and preferences of individuals with cognitive impairment regarding care issues in the home (Kane, 2000); and (b) understanding how accurately the family caregiver perceives the person's care values and preferences (Feinberg, Whitlatch, & Tucke, 2000; Whitlatch & Tucke, 2000).
The limited gerontological literature on everyday care values in long-term care suggests that there may be themes or categories of "generic" values and preferences for older adults (McCullough, Wilson, Teasdale, Kolpakchi, & Skelly, 1993). In their qualitative study of elder decision making, McCullough and colleagues interviewed 23 cognitively intact older adults (and one of their close family members or friends), each of whom had changed his or her living situation in the past month (e.g., entered a nursing home or congregate living setting, began attending adult day care, moved in with another person, or stayed at home with additional paid help). From these open-ended interviews, the researchers identified eight categories of generic values important to older adults, most notably environment (e.g., maintain personal property, live at home), self-identity (e.g., maintain continuity with the past, be independent), and relationships (e.g., be with family). As noted by McCullough and associates, the elders in their study were most concerned with their physical and social environment, and their self-identity. In contrast, family members were more concerned with the elder's care (e.g., meet elder's care needs, have meals for the elder), security (e.g., elder is safe, prepare for elder's future), and psychological well-being (e.g., elder is happy, active). The incongruence between the elder's emphasis on self-identity and environment and the family's concerns with health and the elder's well-being suggest that the two groups have different perceptions and values of what is important in long-term-care decisions. Balancing these divergent concerns is an important goal for professionals who assist with care planning (McCullough et al.). Unfortunately, few guidelines or tools are available to help identify the values and care preferences that may be integral to the family's decision-making process.
A better understanding of values and preferences in daily care would be beneficial to families and practitioners, in part because of the complexity and intimate nature of long-term-care decisions. The few instruments that probe values and preferences are designed for research purposes with cognitively intact persons (Carpenter, Van Haitsma, Ruckdeschel, & Lawton, 2000; Degenholtz, Kane, & Kivnick, 1997; McCullough et al., 1993). In this article we describe the development and preliminary psychometric properties of a Values and Preferences Scale that can be used both with individuals with cognitive impairment and their caregivers. This scale assesses the everyday care values and preferences of persons with cognitive impairment in community settings, as well as the family caregivers' perceptions of their relatives' preferences. An important aspect of this scale development is the necessity of creating one measure that is statistically sound and meaningful for the two different samples (i.e., cognitively impaired elders and caregivers) that may respond to it. One goal is to help caregiving dyads identify areas where caregivers underestimate or overestimate the importance of their relative's values and preferences, with the hope that this will increase communication and care planning in the early stages of disease or disability. Although caregivers and persons with cognitive impairment will respond to the same questions (i.e., rating the importance of each item to the individual with cognitive impairment), many characteristics that differentiate the samples (e.g., cognitive impairment, age) could influence how items are interpreted. The challenge is to find items that are meaningful to older adults and their caregivers in the same way.
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Procedures
Both the Cleveland and San Francisco sites followed the procedures subsequently described, and differences in procedures between the sites are noted. Rates of screening and eligibility were comparable across the sites and therefore are presented for the sample as a whole.
To be eligible for the study, a family caregiver had to be (a) the primary caregiver (i.e., the person most involved in providing daily hands-on and other assistance to the person with cognitive impairment), or (b) the spouse or adult child (FCA sample) or the informal caregiver (BR sample) of the person with cognitive impairment. The person with cognitive impairment had to (a) have a confirmed diagnosis from a physician of an adult-onset brain disease or disorder (FCA sample) or symptoms of memory problems (BR sample); (b) be living at home (i.e., living in the community rather than in an institutional setting); and (c) be mildly to moderately cognitively impaired as defined by scores between 13 and 26, as measured by the Folstein Mini-Mental State Exam (MMSE). We selected this range in MMSE scores on the basis of prior research suggesting that persons with early-stage cognitive impairment score between 23 and 26 (i.e., mild cognitive impairment), or between 18 and 22 and 13 and 17, which is considered moderate to more severe cognitive impairment (Feinberg & Whitlatch, 2001; Molloy, Alernayehu, & Roberts, 1991; Sansone, Schmitt, Nichols, Phillips, & Belisle, 1998; Tombaugh & McIntyre, 1992; Whitlatch, Feinberg, & Tucke, in press).
We found about one third (n = 55 or 32%) of the 173 persons with cognitive impairment who met the initial inclusion criteria to be ineligible as a result of their scores on the MMSE. Nearly one third of those (n = 18 or 33%) scored less than 13 on the MMSE, whereas the other two thirds (n = 37 or 67%) scored above 26 on the MMSE. In addition, 5 individuals with cognitive impairment were unable to complete the written-consent process or declined to continue after a partial interview, and 2 dyads were used for pretesting. The final sample for the study includes 111 adults with cognitive impairment and 111 family caregivers. For more detailed information about the study's procedures, see Feinberg and Whitlatch (2001, 2002) and Whitlatch and Feinberg (2003).
Instrument Development
In developing the Values and Preferences Scale (VPS), we wanted to explore aspects of everyday life that persons with cognitive impairment consider important and to understand better whether family caregivers were familiar with their relative's care-related values and preferences. When assessing values and preferences in long-term-care decision making, Carpenter and colleagues (2000) identified a number of conceptual issues, the first of which is central to measurement development: (a) Are there overarching domains in which values and preferences are organized? (b) Are there specific categories within domains of preferences related to care? (c) Are some preferences more important than others? Keeping these important conceptual issues in mind, we first conducted an extensive literature review to identify empirical work and instruments that would guide the development of a scale concerning values and preferences. As we noted previously, relatively few studies were identified in the assessment of values and preferences of older adults for everyday home- and community-based care. Moreover, no prior studies assessed the values and preferences for everyday care of community-dwelling individuals with cognitive impairment and their family caregivers. Consequently, items for our VPS were drawn from two previous exploratory studies with cognitively intact samples (Degenholtz et al., 1997; McCullough et al., 1993). We developed additional items in consultation with an advisory committee familiar with the care issues of this population; the committee included researchers, practitioners, family members, and persons with cognitive impairment.
The items we drew from Degenholtz and colleagues (1997) were developed as part of an exploratory research study investigating the values and preferences of cognitively intact older adults in two case-managed home-care programs. The conceptual basis for their item development was drawn from the field of bioethics to consider the context within which beliefs and actions occur. Items were developed with the assistance of home-care case managers who gave input about what was important to know about client values and preferences in order to develop a care plan (Kane, 2000). As Kane has noted, "Although values and preferences have an emotional dimension, they also bear a relationship to cognitive understanding of the world and how it works and, therefore, are related to individuals' beliefs and attitudes" (p. 238).
The resultant protocol asked 606 new or ongoing clients to rate the importance of seven values and preferences (e.g., organize routines in a particular way; trade-off between freedom and safety) on a 3-point scale (i.e., "How important is this issue: very important, somewhat, not important at all"). Two open-ended questions asked about choice of proxy decision makers and "what in your life makes you feel most like yourself" (Degenoltz et al., 1997). We adapted seven concepts or items for use in the VPS because of their relevance and application to persons with cognitive impairment, including (a) maintaining personal privacy, (b) organizing daily routines, (c) participating in activities (in the home or outside the home), (d) involving particular family or friends in care, (e) not involving particular family or friends in care, (f) coming and going as the individual pleases, and (g) accepting some restrictions in order to be safe. We chose not to include two items from the protocol of Degenholtz and associates because of their conceptual overlap with items chosen from study of McCullough and colleagues (1993; see subsequent text): (a) take steps to avoid pain or discomfort; and (b) complete some project, attend some future event, or do something you look forward to.
We also drew items from the exploratory work of McCullough and associates (1993), who conducted a qualitative study to map the personal, familial, and professional values involved in long-term-care decisions. Concept mapping is a data analytic approach that produces a pictorial representation of times, ideas, or concepts (Carpenter et al., 2000). The intent of a concept map is to portray item similarities and differences, based on ratings from a group of individuals. In the study by McCullough and colleagues, the focus was to identify self-reported values that respondents found relevant to the long-term-care alternatives they had considered. On the basis of their relevance and application to persons with cognitive impairment, we adapted 15 items from the study for inclusion in the VPS. These items fell into eight conceptual domains: social interactions, environment, safety, autonomy, self-identity, helping out, finances or cost of care, and family caregiver issues.
In all, we adapted 22 items from previous instruments, with an additional 15 items (e.g., not live in a nursing home, have money to leave family, have something useful to do) that we developed in consultation with the expert members of the advisory committee. We made minor revisions to the scale after we pilot tested it with four dyads (e.g., wording changes to clarify intent of questions and introduction to the scale). The VPS described here includes the original 37 values and preferences items that are related to everyday care that persons with cognitive impairment feel are "very important" (3), "somewhat important" (2), or "not at all important" (1). The parallel caregiver measure asks the caregiver to respond to the question, "How important does your relative feel it is to ________ (e.g., have time to himself or herself)?," thus obtaining the caregiver's perception of the importance of each value and preference to his or her relative. On average, it took no longer than 9 min for the caregivers and 11 min for the elders with cognitive impairment to respond to this scale. Interviewers noted that caregivers and their relatives reacted favorably to the VPS.
Analyses
We designed our data analyses to be exploratory because our primary goal was to develop an instrument to assess the care values and preferences of persons with cognitive impairment and the caregivers' perceptions of their relatives' preferences. Our analyses draw on the work of Lawton, Kleban, Moss, Rovine, & Glicksman (1989), who developed a measure that encompasses three dimensions of caregiving appraisals, and Logsdon, Gibbons, McCurry, and Teri (1999), who developed the Quality of Life–Alzheimer's Disease scale. First, we performed exploratory factor analyses with the caregiver sample in order to determine which items could be eliminated because of poor variance or poor factor loadings. On the basis of previous exploratory and descriptive work (McCullough et al., 1993; Whitlatch et al., in press), we expected that a conceptually and statistically sound factor solution would consist of no more than eight factors (i.e., social interactions, helping out, family caregiving issues, finances, autonomy, environment, safety, and self-identity). Next, we attempted to replicate the factor structure found with the caregiver sample by using the sample of persons with cognitive impairment. We made further adjustments (e.g., deleting weak items) to the scale before settling on a factor structure that was statistically and conceptually meaningful for both samples.
As a final step, we assessed the validity and reliability of the resultant factors and items by using measures drawn from the larger study of caregiving dyads. These measures included the following: (a) the 20-item, 4-point Center for Epidemiologic Studies–Depression scale (CES-D; Radloff, 1977); (b) the 10-item Quality of Life–Alzheimer's Disease scale (QoL; Logsdon et al., 1999); and (c) the Decision Control Inventory (DCI; Conroy & Yuskauskas, 1996). The CES-D and QoL scales have been used in previous studies and have been shown to have good reliability and validity with caregivers (Deimling, 1992 Logsdon et al.; Pruchno, Kleban, Michaels, & Dempsey, 1990; Schulz & Williamson, 1991) and care recipients (Logsdon et al.; Whitlatch, 1999). We expected that QoL would be correlated with the VPS because the scale measures overall and cumulative life experiences, which are likely to be related to or have an impact on the values individuals may have for their own life goals and related care values. Conversely, we felt it unlikely that the CES-D would correlate with the VPS because the CES-D, but not the VPS, assesses specific behaviors consistent with an emotional state.
Lastly, the DCI was developed to assess the respondent's level of involvement in day-to-day decision making (e.g., what to do with money, when to get up) whereas the parallel caregiver version assesses the caregiver's perception of the involvement of the person with cognitive impairment. The DCI is adapted from the Independent Evaluation of the Monadnock Self-Determination Project with persons with developmental disabilities and has been revised for use with adults with cognitive impairment and their family caregivers as part of the present study. Conroy and Yuskauskas found good internal consistency (Cronbach's alpha, 
= 0.95) and test–retest reliability (Pearson correlation between Time 1 and Time 2, r =.86). Internal consistency for the present sample also is good (sample elders, = 0.84; caregivers, = 0.91). We expected that the DCI would be correlated to the VPS because both scales include items related to care situations and preferences, and involvement in decision making.
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Results |
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The majority of the caregivers were female (81%), African American (59.5%), and married (65%). The average age of caregivers was 61 years (SD = 13.9, range 30–91 years), although more than one third (39%) were at least 65 years of age or older. Two thirds were either wives (33%) or daughters (33%). Nearly all (92%) were high school graduates, and over two thirds (68%) had at least some college education. Most caregivers (30%) reported an annual family income between $30,000 and $49,000 a year (1997 or 1998 dollars), with more than one half (54%) reporting annual family incomes over $30,000. The percentages of caregivers who were retired or employed were equal (40%). On average, they had been providing care for 3 years (SD = 3.4, range <1–23 years) and provided 72 hours of care per week (SD = 52.7, range 2–168 hr).
Exploratory Analysis With Family Caregivers
We performed an exploratory factor analysis on the caregivers' responses to all 37 items. Using Bartlett's test of sphericity to test for relationships among variables, we found that the significant chi-square (
2 = 1539.00, p <.00) suggested the data were suitable for factor analysis. When we included all factors with eigenvalues greater than 1.0 in a principal component's extraction with varimax rotation, a 12-factor solution that explained 71% of the variance resulted. Examination of the explained variance and the skree plot suggested a more meaningful and parsimonious model of no more than 4 factors. A second factor analysis that we performed with a 4-factor criterion revealed a factor solution that explained 41% of the total variance with factors consisting of 6 to 12 items (see Table 1).
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Despite the coherence of the four-factor structure on visual inspection, a number of the items in the scale appeared weak. In an attempt to include only useful items, we decided to delete items that met one of more of the following criteria: (a) low variance (i.e., nearly all caregivers and care recipients rated the item as "very important"); (b) poor factor loading (i.e., factor loadings <.40); or (c) ambiguous factor loadings (i.e., item loaded on two or more factors). We deleted eight items, including (1) "have a comfortable place to live" (met criteria a and b); (2) "accepting restrictions in order to be safe" (met criterion b); (3) "maintain dignity" (met criteria a and b); (4) "maintain continuity with the past" (met criteria b and c); (5) "not live in a nursing home" (met criteria b and c); (6) "have personal privacy" (met criteria b and c); (7) "use services only covered by insurance" (met criteria b and c); and (8) "caregiver not put life on hold" (met criteria a, b, and c).
Replicating the Factor Solution With Care Recipients
Using the results of the caregiver sample as a guide, we entered the 28 parallel items for persons with cognitive impairment into a separate exploratory factor analysis by using a promax (i.e., oblique) rotation. For this analysis, we included individuals with MMSE scores greater than 15 (n = 97). We used this cutoff on the basis of previous research with similar samples suggesting that persons with mild to moderate cognitive impairment (i.e., MMSE scores < 15) are able to answer questions reliably and accurately (Downs, 1997; Feinberg & Whitlatch, 2001, 2002; Kitwood & Benson, 1995; Sansone et al., 1998; Tombaugh & McIntyre, 1992; Whitlatch et al., in press; Woods, 1999).
The four-factor criterion resulted in factor loadings that were not only quite dissimilar from those of the caregivers but also made little conceptual sense on their own. Whereas the first two factors seemed to group items into either an autonomy or a family–social interaction category, the third and fourth factors were much more ambiguous. In addition, neither the third nor fourth factors contributed much additional explained variance or contained many items (six and three items, respectively). We found similar results when we used a three-factor criterion. Two factors explained much of the total variance, whereas the third (three items) explained little additional variance. These results seemed to suggest that a two-factor model was more effective than a four-factor model in retaining a cohesive and conceptually sound factor structure for persons with cognitive impairment. Although this model involved fewer factors than what we expected based on caregiver results, a comparison of the four-factor caregiver model and the two-factor care recipient model did reveal similarity. We found many of the items that caregivers placed in the usefulness–purpose and decision-making categories in the broader personal autonomy factor for persons with cognitive impairment. Similarly, items that fell into the caregivers' burden of care and family–social environment factors were combined in the environment–social network factor for care recipients. It appeared plausible that, although both caregivers' and care recipients' responses could be divided into two broad factors (environment–social network and personal autonomy), caregivers' responses could be further divided into two factors within the larger factors.
Items that fell into the first factor, environment–social network, are consistent with the care recipients' maintaining management or control of their larger surroundings, environment, and positive supportive relationships. The items reflect the importance to the elders of their community and support network and that they continue to contribute to their larger support network. The second factor, personal autonomy, reflects the sense that the person with cognitive impairment is making his or her own decisions and maintains control of his or her daily routines and personal activities. This factor suggests the importance of retaining a sense of purpose.
On the basis of these results, we hypothesized that a two-factor model would be most suitable for obtaining a VPS appropriate for simultaneous use with caregivers and care recipients. Results of separate factor analyses for caregivers and for persons with cognitive impairment (using a two-factor criterion) are compared in Table 2. Although the majority of items from both samples could be grouped into similar factors, there were eight items that grouped in different factors. For the three items with loadings that were fairly strong on both factors for either the caregiver, care recipient, or both, we made the decision to include the item within the factor that made most conceptual sense. Thus, we included "able to practice religious or spiritual beliefs" and "keep in touch with distant family and friends" in the environment–social network factor, whereas we included "feel useful" in the personal autonomy factor. We deleted an additional five items because caregivers and persons with cognitive impairment clearly categorized the items in opposite factors (i.e., the two samples showed strong primary and weak secondary loadings on opposite factors). For example, "have time to self," "do things with other people," "exclude certain family and friends from helping," and "avoid being an emotional burden" loaded on the caregiver's environment–social network factor and the personal autonomy factor of the person with cognitive impairment, whereas "have family provide help" loaded on the caregiver's personal autonomy factor and the care recipient's environment–social network factor.
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=.81 and personal autonomy, =.82; person with cognitive impairment, environment–social network, =.81 and personal autonomy, =.70). Correlations among the factors and measures of caregiver and care recipient quality of life, depression, and involvement in decision making (DCI; Conroy & Yuskauskas, 1996) showed expected patterns of association. The VPS factors were significantly correlated with the caregivers' perceptions of their relatives' quality of life (r =.41 and.31, p <.01) and involvement in decision making (DCI; r = 58 and.34, p <.01) and with the care recipient's perception of their own quality of life (r =.28 and.21, p <.05) and involvement in decision making (r =.47 and.30, p <.01). Conversely, and as we expected, the VPS factors were not correlated with the caregivers' and care recipients' CES-D scores.
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Discussion |
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Our analysis suggests that 24 of the original 37 items group into two domains of care values and preferences related to environment–social network and personal autonomy. This two-factor model was appropriate for both persons with cognitive impairment and their family caregivers. Although the four-factor model initially found for the caregiver sample was not replicated with the care recipient sample, the two-factor model combined items from the four caregiver factors in a way that made conceptual sense. Most items from the caregiver factors of usefulness–purpose and decision making addressed and grouped into the broader factor of personal autonomy for both persons with cognitive impairment and caregivers. Similarly, the caregivers' burden of care and family–social environment factors included items that fell into the care recipients' broader factor of environment–social network. We hope that this scale, with its two subdomains or subscales, makes the use of the VPS more practical within already existing care management organizations, where the time and reimbursement available to assess both the caregiver and person with cognitive impairment is often very limited.
Given the differences between persons with cognitive impairment and caregivers, most notably the presence of cognitive impairment, but also demographic differences (e.g., age, gender, education, and income), our inability to replicate the four-factor structure is not surprising. The differences in the caregiver and care recipient factor structures (i.e., the different number of factors and the slight differences in the underlying items within each factor) may indicate the possibility of two phenomena. First, it could be argued that having a cognitive impairment may directly affect a person's ability to answer these questions in a valid and meaningful manner. We believe, however, that because the caregiver responses grouped in a manner that was consistent with a two-factor structure, the samples' responses were more similar than dissimilar. Our results may be an encouraging addition to the trend in the literature indicating that persons with mild to moderate cognitive impairment are able to participate and respond reliably and accurately to these types of questions (Feinberg & Whitlatch, 2001; Sansone et al., 1996, 1998; Whitlatch et al., in press). Second, the literature on personhood in dementia (Woods, 2001) and chronic illness (Egan, 2004) suggests that the experience of having a cognitive or chronic impairment changes a person's perspective about his or her life. This developmental change may, in turn, influence a person's expectations for his or her care. The responses of persons with cognitive impairment may reflect changing values of what is important to them concerning their own care, daily routine, and life, as well as the impact of their condition on their family and their preferences for continuing to contribute, reciprocate, and feel useful.
This research suggests that there are broader domains in which specific care values and preferences are organized or grouped (Carpenter et al., 2000). Moreover, it appears that items within the environment–social network domain may be more intrinsic to an individual's preferences for care as compared with the items within personal autonomy, which are more central to an individual's need to feel useful and to have purpose to his or her life. This finding, as suggested by Carpenter and colleagues, indicates that care-related items may be conceptually and practically distinct from other domains of preferences. Because of the exploratory nature of this study, we were unable to confirm the environment–social network and personal autonomy factor structure. Although this two-factor structure leads to a useful instrument for use in practice and research settings, further confirmation with other samples is recommended.
It is important to remember that we deleted a number of items because of their very low variability in that both caregivers and persons with cognitive impairment rated the questions as very important (e.g., not live in a nursing home, have a comfortable place to live, and caregiver not put life on hold to provide care). The 13 items that we deleted from the scale were drawn from all three sources; that is, we deleted 3 items from Degenholtz and colleagues (1997), 3 of our own items, and 7 items from McCullough and associates (1993). Psychometrically, these items add little to the scales, yet at the level of practice and intervention, these items may be critical to understanding what is important to persons with cognitive impairment and caregivers. It is worth noting that the original 37 items had fairly robust internal consistency when we analyzed them as a group (i.e., = 0.87 for persons with cognitive impairment, and = 0.88 for caregivers). The larger original scale should be further analyzed with other samples in various settings. However, practitioners could use any of the VPS items as a way to prompt discussion within families.
These results are not without their limitations. First, the advisory committee provided consultation in the development of the VPS and found the scale to have content validity. Nevertheless, the scale has not been validated against other measures of care values and preferences. Determining convergent or discriminant validity will be very challenging given the paucity of comparable measures. Second, although the total variance explained by the proposed factor structure is not high (34.2 % for the combined caregiver and care recipient sample), this is not inconsistent with other caregiving instruments. For example, Lawton and colleagues (1989) reported the explained variance from their exploratory factor analyses to range from 38.4 % to 46.4%. Third, although Etzioni (1988) recommended understanding how preferences flow from values and the relationship between emotional ties and value commitments, our study does not examine these important issues. We also do not explore how the caregivers' values for their own lives affect how they view and perceive their relatives' preferences (Roberto, 1999). As noted by Roberto, when examining concordance between older people (with or without cognitive loss) and family caregivers, it is important to consider the values of the older individual and the normative values of the family caregiver. These more process-oriented issues will undoubtedly become more salient as we develop and evaluate interventions that enhance the dyad's decision-making abilities. Last, we did not examine long-term stability of values and preferences over time as the person with cognitive impairment becomes more impaired and less able to answer questions accurately about his or her own care preferences. It will be useful to examine these issues as we follow our sample over time.
The assessment of values and care preferences and discussions about decision making are, practically speaking, difficult and challenging for families to undertake (Feinberg et al., 2000). Caregiving requires an understanding not only of personal values and preferences, but also of what the older person values most in life. However, if discussions are postponed that could help to clarify the person's values and preferences and the needs of the family caregiver, there could be negative consequences for both members of the dyad over time. For many family members, knowing their relatives' wishes for daily care may reduce the strain in developing and implementing a plan of care for future long-term services. Everyday care that embraces the cognitively impaired individuals' own values and preferences is likely to provide caregivers with greater satisfaction while simultaneously easing their burden and strain, goals that are consistent with the trend toward consumer direction in home- and community-based care (Kane & Degenholtz, 1997). It is our hope that further testing and validation of the VPS Scale will lead to its broader use by professionals who work with persons with cognitive impairment and their caregivers. Our next step is to explore which care preferences are viewed as most important to persons with cognitive impairment and whether caregivers have a clear understanding of their relatives' preferences. It will also be interesting to examine how these values and preferences change over time as cognitive impairment progresses. A more in-depth understanding of a family's care values and preferences will help inform the development of interventions that enhance the family's decision-making skills, which may, in turn, help to improve the well-being of both the person with cognitive impairment and the family caregiver.
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Footnotes |
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1 The Margaret Blenkner Research Institute, Benjamin Rose, Cleveland, OH.
2 National Center on Caregiving, Family Caregiver Alliance, San Francisco, CA.
Decision Editor: Karen A. Roberto, PhD
Received for publication April 26, 2004. Accepted for publication December 15, 2004.
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